Disability Research in a
Developing Country
Naila Z. Khan,
MBBS, FCPS, PhD (London)
Child Development and Neurology Unit
Bangladesh Institute of Child Health
Dhaka Shishu Children’s Hospital
Objective
• Demonstrate how research can change
the quality of child survival and human
lives
Presentation Plan
•
•
•
•
Epidemiological Research: Cross
Sectional Studies
Evidence-Based Practice: Prospective
Studies
Public Health issues: Case Studies
Future directions
Epidemiological Research:
Cross-Sectional Studies
Newborn, Infant and Child Mortality Trend and Target
in Bangladesh
200
180
173
160
152
139
140
120
133
117
116
105
100
80
96
87
94
75
63
60
88
82
66
60
52
48
40
42
65
41
65
52
51
37
35
21
20
0
1982-86
1985-89
1987-91
1989-93
U5MR
IMR
1992-96
NMR
1995-99
1999-2003
2004-06
Target
2015
Bangladesh: Mortality declining
Disability rising (per 1000)
160
150
140
Child Mortality
Child Disability
120
120
100
children/1000 80
68
65
60
40
20
0
1980s
Bangladesh Health Watch, 2006
2000s
Strategies for Estimating the Prevalence
of Disabilities in Populations
• Administrative Record Review (schools,
clinics, other social services)
• Registries
• Birth Cohort Studies
• Household Censuses, Surveys
• Key Informant Surveys
• Utility approaches (e.g., DALY)
• Two-Stage Prevalence Surveys
Underestimates:
-Underprivileged
-Poor
-‘Silent’ ‘Covert’
-Girl child
-Very young
-Inadequate info
Two-Stage Design for Home-based Screening
followed by Center-based Assessment of Children
with Disabilities in Underserved Populations
Screening of All Children
Screened +
(<20%)
Clinical Assessment
Disability
“True Positive”
No Disability
“False Positive”
Screened –
(>80%)
Clinical Assessment
(10% of screened-)
Disability
“False Negative”
No Assessment
(90% of screened -)
No Disability
“True Negative”
The Ten Questions: piloted in 10 countries; major surveys in Bangladesh, Jamaica and
Pakistan. Zaman et al, 1990; Khan and Durkin, 1995; >30 publications. Most used
instrument world-wide (Maulik and Darmstadt, Pediatrics, 2007)
UNICEF, 2008:
best measure of children at-risk for disability
Only Stage One done in >30 countries
35
30
25
20
15
10
5
0
•
31
23
18
12
7
a
sni
o
B
a
ai l
h
T
c
n
esh
oo
bli
d
r
u
e
a
p
l
m
ng
Re
Ca
n
Ba
a
ric
f
A
al
r
t
n
Ce
nd
23 22.3
21.8
22
Disability directly related to Poverty
21.4
21
% screened
positive for 20
disability in 19
Bdesh
18
19
18.6
17
16
poorest
2nd
3rd
wealth quintile
4th
wealthiest
Stage Two:
Professional Assessment Tools
Bangladesh, Jamaica, Pakistan: doctors, psychologists
MEDICAL ASSESSMENT
-General Developmental Assessment (GDA)
PSYCHOLOGICAL ASSESSMENT
-Psychometric Tests
-Tests of Adaptive Behaviour
DIAGNOSIS
-Consensual Diagnosis
-Impairment, Disability, Handicap (WHO,2001)
Selected References: Studies funded by NIH; CDC, USA
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•
•
•
•
•
•
Shrout PE, Newman SC, Design of two-phase prevalence surveys of rare disorders. Biometrics, 1989;
45:549-55.
McNamee R, Efficiency of two-phase designs for prevalence estimation. International Journal of
Epidemiology, 2003; 32:1072-8.
Zaman S, Khan N, Islam S, Banu S, Dixit S, Shrout P, Durkin M, Validity of the Ten Questions for
screening serious childhood disability: results from urban Bangladesh. International Journal of
Epidemiology, 1990; 19(3):613-20.
Durkin MS, Davidson LL, Hasan MZ, Hasan Z, Hauser WA, Khan N, Paul TJ, Shrout PE, Thorborn MJ,
Zaman S. Estimates of the prevalence of childhood seizure disorders in communities where
professional resources are scarce: results from Bangladesh, Jamaica and Pakistan. Paediatric and
Perinatal Epidemiology. 6:166-180, 1992.
Durkin M, Khan N, Davidson LL, Zaman SS, Stein ZA. The effects of a natural disaster on child
behaviour: evidence for post-traumatic stress. American J Public Health. 83: 1549-1553, 1993.
Durkin MS, Davidson LL, Desai P, Hasan ZM, Khan N, Thorburn MJ, Shrout PE, Wang W, Validity of the
ten questions screen for childhood disability: results from population-based studies in Bangladesh,
Jamaica and Pakistan. Epidemiology, 1994; 5:283-9.
Durkin MS, Wang W, Shrout PE, Zaman SS, Hasan ZM, Desai P, Davidson, LL, Evaluating a Ten
Questions screen for childhood disability: reliability and internal structure in different cultures. Journal
of Clinical Epidemiology, 1995; 48:657-66.
Durkin MS, Hasan ZM, Hasan Z, Uses and limitations of the Ten Questions screen for childhood
disability in Pakistan. Journal of Epidemiology and Community Health, 1995; 49(4):431-6.
Durkin MS, Khan NZ, Davidson LL, Huq S, Munir S, Rasul I, Zaman SS, Prenatal and postnatal risk
factors for mental retardation among children in Bangladesh. American Journal of Epidemiology, 2000;
152:1024-32.
Abbey L Berg, Hemayetunnesa Papri, Shamim Ferdous, Naila Z Khan, Maureen S Durkin. Screening
Methods for Childhood Hearing Impairment in Rural Bangladesh. Int J Ped Otorhinolaryngol. 2006; 70:
107 – 114.
Naila Z. Khan, Shamim Ferdous, Robiul Islam, Afroza Sultana, Maureen Durkin, Helen McConachie.
Behaviour problems in young children in rural Bangladesh. J Trop Peds. 2009 Jun; 55(3):177-82. .
Evidence for Cross-Cultural Comparability of the
10 Questions Screen for Childhood Disability:
Sensitivity
100
Bangladesh
Jamaica
Pakistan
% of serious
disability 50
identified
0
e
ti iv
n
og
C
M
or
t
o
Se
re
u
iz
n
o
i
is
V
H
ng
i
r
ea
Disability Dynamics: Targeting Impairments
World Health Organization, ICF, 2001
Normal
Disease :body structure and function Reversible
Impairment :temporary activity limitation
Disability:permanent activity limitation:mild, moderate, severe
Irreversible
Handicap (poor social participation)
WHO, 2001
Prevalence per 1000
Prevalence of Impairment vs. Disability in
5 sites in Bangladesh by PHC/CBR services
50
Good
CBR;
40
Good
PHC
Poor
CBR;
Good
PHC
Poor
CBR;
Poor
PHC
Poor
CBR;
Poor
PHC
49.18
32.77
31.4
30.21
30
Poor CBR;
Very poor
PHC
26.03
23.14
23.44
20
10.83
8.55
10
4.07
0
Dhamrai
Savar
Disability
K'ganj
N'shingdi
Impairment
Faridpur
Limitations of TQ-based two
stage survey
1. Does not address ‘impairments’, focuses
on ‘serious’ disabilities
2. Does not screen <2 year olds
3. Stage Two requires multidisciplinary
professional teams to assess
4. Stage Two assessment procedures need
standardization, especially
psychometric tools
An Alternative Single Professional Approach:
MDI
assessment for 2-9 year olds field tested, awaiting publication
120
100
80
60
40
20
0
pr
No impairment
Impairment
e
r n g h n
y
r
r
x
an efle oto oto isio rin eec itio vio izur
r m m v ea sp gn eha se
e
h
ss ne
v
co b
iti gro fi
im
Impairment
Khan, Muslima, Darmstadt et al, Pediatrics, 2010
Multidisciplinary professionals (physicians, therapists, special
teachers) from Bangladesh, Bhutan and Australia (Fiji)
attending the RNDA workshop, Dhaka, September, 2010
Khan, Muslima, McConachie, Darmstadt et al. Validation of home-based
neurodevelopmental screening tool for <2 year olds, submitted to Pediatrics, October,
2010
Evidence-Based Practice:
Prospective Studies
Incidence by Diagnosis: CDC, DSH
t
men
p
o
l
e
v
al De
m
r
o
N
PEM
ba l
/G lo
c
o
r
yd
o c/H
r
c
i
is
M
ing it
n
e
y/ M
path
o
l
a
nt
ph
irme
Ence
a
p
n Im
Visio
nt
irme
a
p
m
ing i
r
a
e
H
s
ob lem
r
p
h
ealt
ta l h
n
e
es
M
culti
i
MR/
f
f
i
hd
peec
s
/
a
i
on
as
Aph
ress i
g
e
r
/
lay
ic de
f
i
c
e
lsy
sp
al Pa
r
Non
b
e
Cer
ep sy
Epi l
0
5
10
15
20
25
30
35
40
% of children
Data from 4800 children, Child Development Center, Dhaka Shishu Children’s Hospital, 2001
Advocacy: Pharmaceuticals restarted
manufacturing phenobarbitone
SH Banu,
trained in
GOSH,
1999-2003
How to reach unreached children?
RCT: Distance Training Packages
•
•
•
Pictorial Manuals used as guidelines and
reminders for parents
Manuals for: Motor, Speech, Cognitive
development, ADL
Idea from a VSO, UK physiotherapist
Distance Training Package:
head control through play activities
↑
•Trained community workers
working with mothers in a rural
home
McConachie, Zaman, Khan et al, J of Peds,
2000, funded by DFID, UK
Functional outcomes for all children
followed up for two years
2
Z scores
on test for
adaptive
behavior
0
-2
-4
2
14
not as intended
34
34
as intended
McConachie et al, J of Peds, 2000
Negative findings
1.One third had difficulty in attending sessions due
to travel costs, family restrictions, cultural
taboos (McConachie et al, CCHD, 2001)
2. Mortality highest among malnourished and
tetraplegic group (Khan et al, DMCN, 1998)
3. Mothers became high risk for psychiatric
morbidity (Mobarak et al, J Pediatric Psychology, 2001) (Similar finding
PTBs FU: Khan et al, CCHD, 2009; funded by SNL)
- most compliance mothers most at risk
- ‘burden of caring’ eg. poor sleep, difficulty feeding;
behavior problems increased stress
- stress decreased in ‘no intervention’ group
Seating and Feeding Clinic
for children with Cerebral Palsy
Outcomes:Before & after
Mel Adams, field work in CDC, DSH, obtained PhD from London University, 2008
Adams M, Shilpi AB et al, 2009, submitted to DMCN ;
low cost aids, Center for the Rehabilitation of the Paralyzed (CRP): Valerie Taylor
Visual improvement by initial visual functions
(best results in 6-13 month infants: Humaira Muslima et al,
2000)
45
42
40
35
30
% of
25
improvement
20
in vision
15
10
5
0
29
no functional vision
some vision
Early intervention for visual impairment
(“Show me what my friends can see”: Dhaka Shishu Hospital, 2001)
Neurodevelopmental Follow Up of Preterm Infants:
Early Identification, Early Intervention Outcomes
(Khan NZ, Muslima H, et al, Pediatrics, 2006)
At 30 months
At 1 month
Low risk
6%
High risk
55%
Serious
impairment
23%
Moderate
risk
39%
Mild
impairment
45%
Normal
32%
Rising maternal stress with increasing numbers of
visits in a cohort of preterm infants
(Khan, Muslima, Parvin, Bhattacharya et al, 2007, submitted
to J of Pediatrics)
#
of
vis
its
low risk
high risk
Risk for psychiatric morbidity in mothers
Establishment of Shishu Bikash Kendra (CDCs) in 14
Government Medical College Hospitals
2008-2009
2009-2010
2010-2011
Public Health issues:
Case Studies
Media Campaign Against Leaded Petrol
Media Campaign Against Leaded Petrol
LEAD – FREE BANGLADESH
Case Studies: followed by media campaign against
leaded petrol
Khan NZ, Khan AH. Lead poisoning and psychomotor delay in Bangladeshi children.
Lancet.(letter) Feb 27; 353 (9154): 754, 1999
Child Protection: Study of CSA in CWDs
Bangladesh Protibondhi Foundation, 2009
Funded by Save the Children, Sweden-Denmark
Percentage of sexual abuse and types
of disabilities :
111/216 (51%) abused or ‘possibility’
Distribution of age and possibility of
sexual abuse and case of sexual abuse
Age/Form of
N
Abuse
(7-10)
Possibility of
Sexual Abuse
Sexual Abuse
Total
%
N
(11-14)
%
N
(15-18)
%
Total
24.3%(27)
14
12.61
11
9.90
2
1.80
32
28.28
28
25.22
18
16.21 75.7%(84)
46
40.89
39
35.12
20
18.01
100%
(111)
Future Directions
Changing incidence of neurodevelopmental
impairments recorded in the CDC: between 19912000 and 2001- 2006
seizures
36
behavior
43
31
13
cognition
55
28
speech
56
36
11 15
hearing
21 25
vision
fine motor
43
34
gross motor
53
53
0
10
20
30
%
40
50
60
2001-2006
1991-2000
Conclusion
• Epidemiology, clinical audit, evidence-based
research are able to prevent and ameliorate disability
• Research and publications based upon the above
are able to provide government with valid direction
for prevention and care
• Changing scenarios need to be determined, at least
once in every decade
• International donors and researchers need to connect
with national professionals, to be able to achieve
sustainable changes in the public sector